Very sad news

We've tried to contact everyone, and I'm sorry if you are finding out this news here.

Unfortunately it looks like the difficulty with monitoring both babies last week was due to the fact that sometime after my ultrasound on January 21st, one our of girls passed away. We have chosen to name her Bridget Evangeline Leitao.

It's been pretty rough but we're hanging in there. I started having contractions shortly after learning we had lost Bridget and have been put on medication to stop those. I am now on 24 hour monitoring and our surviving twin has been doing well.

I was given a round of steroid shots over the last 24 hours, which will help boost the baby's lung maturity and lower some other risks of prematurity in case she has to be delivered in the next two weeks. We're hoping I can stick it out for as long as possible. The problem with the 24 hour monitoring is that I am basically on bed rest in order to keep the baby on the monitor. I'm allowed up for showers and bathrrom breaks, and have started taking a couple of 5 minute walks around the maternity ward every day. It's hard on me, especially since we are still reeling emotionally from our loss, but I'm staying focused on the health of our surviving baby.

Our main concerns at this point are premature labor, cord entanglement -the original issue we were worried about and the most likely reason we lost Bridget- and possible brain injury as a result of the babies' shared vascular systems. We're planning on having an MRI in a couple of weeks that we hope will show that our surviving baby was able to escape any serious brain injury.

Thank you everyone for your thoughts and prayers.

Monitoring these girls isn't easy!

We've had a few bumps in the road getting our monitoring started.

Our current goal is to try to get a 5 minute "strip" of the girls' activity three times a day. So far I've had two sessions and each one has lasted about an hour. Each time they can only get one baby to stay on the monitors. It's a little disconcerting, but they spend the hour chasing the second baby around, so we're pretty sure they are both okay. They are going to bring up the ultrasound machine this afternooon to try to help them find both babies.

Some nurses are fine with this, others are more negative. I keep hearing how hard it is to monitor babies this young and that it's "never" done, and is "useless." That get's a little frustrating, but I know why I'm here, and the good nurses make up for the not so nice ones. I realize it's going to be hard, but we have a very rare, very high-risk type of twins, so they need special treatment and I'm not going to feel bad about it.

Sleeping here is somewhat difficult, but not awful. I know a lot of women who are admitted long term take something to help them sleep but I would rather not do that unless I have to. The food is also okay, and at least I get to order from a menu each meal so I'm not stuck with standard meals - unfortunately the selection isn't fabulous and they don't always get my order right, but this is a hospital after all.

I got out for a walk outside yesterday afternoon. That was really nice. I felt like a real person & even had a decaf latte and muffin at a cafe. I'm also making an effort to get dressed properly every day and not just stay in my pajamas :)

Here are a few photos from the ultrasound yesterday - I had another of those "ohmygoodness there are babies inside me" moments when I was looking at them. I can't wait to see what they look like!

Baby B was ready to be photographed.




Baby A was hiding, but you can see her face a little on the right (next to her sister's head).

I've moved in!

I now live at the University of Louisville hospital, and hopefully will be here for 10 weeks or so. The babies need to monitored closely, even though I and they are healthy and doing well so far.

Luckily I am able to work from the hospital, so that will keep me busy!

Yesterday was my first day and it went relatively smoothly. I didn't actually check in until late in the afternoon so that made it go faster.

I had a consultation with a nurse practitioner from the NICU last night. She gave me a couple of books to read and shared with me some general information about premature babies, and specifically what our babies chances & hurdles would be if they were born this week. She said a good rule of thumb is to expect to go home 2 weeks before your actual expected due date - which is May 9th. Hopefully I can keep them growing for as long as possible.

Everything looks fine with the girls today. I had my second growth ultrasound and they also looked at the cords. The babies estimated weights are 1.25 and 1.5 pounds, which puts them in the 21st and 46th percentiles. The doctor said that's great, they are both in the normal range. We also looked at the cords and didn't see any serious entanglement issues although they are tangled - you can tell where their cords start, but you can't tell whose is whose in between.

I haven't had my first monitoring session yet, so I will update everyone on how that goes. Our current plan, since it's still early in the pregnancy and very hard to monitor the babies, is to have 2 short monitoring sessions each day, really only looking for major problems at this point. I'll have increased monitoring after next week & they will start doing BPP's (Biophysical Profiles) which is an ultrasound exam where they are really looking at the health of the baby. I got this info from WebMD:

A biophysical profile (BPP) test is done to:
Learn about and keep track of your baby's health. Special ultrasound methods are used to keep track of movement, increases in heart rate with movement (nonstress test), muscle tone, breathing rate, and the amount of amniotic fluid surrounding your baby. If these five areas are within a normal range, your baby is considered to be in good health.

And for those of you who are interested, here are a few photos of my hospital room.

Our Plan

I am being admitted to the hospital for monitoring on January 20th. I will be a few days past 24 weeks, which is considered viability - the babies are considered to be developed enough that they have a good chance of surviving outside the womb if they have to come out. We're hoping they stay in there for a long time though!

To start I will be monitored at least 3 times a day for about an hour each time. This will likely be increased as we progress or if the babies have any trouble.

The hardest part about the whole thing is that I will be away from Michael and our friends, but hopefully it will be worth it.

Here is the link to visitor info for anyone who wants to come see me :)

http://www.uoflhealthcare.org/Default.aspx?tabid=426

More than you ever wanted to know about Monoamniotic twins

Monoamniotic twins are a rare type of identical twins that occurs in approximately 1% of identical twin pregnancies or somewhere between 1 in 35,000 and 1 in 60,000 pregnancies. It occurs when the "split" happens about 9 days after fertilization. Most identical twins split much earlier than this. If our twins had waited any longer to divide they might have been conjoined!

If the split occurs early, each baby will have its own placenta and own amniotic sac. A few days later and the placenta will have formed, but each baby will have its own amniotic sac. Around 9 days later like our girls - and they will be share both a placenta and amniotic sac. Basically they are already having to share a bedroom!

A monoamniotic twin pregnancy is quite high risk because their umbilical cords become entangled and can eventually get compressed. Most monoamniotic pregnancies do not go beyond 34 weeks (40 weeks being full term).

This twin thing isn't going to be simple!

When our doctor confirmed that we were having twins she said that she thought they might be monomaniotic. I had done some reading and although the possible diagnosis was scary, I was aware of how rare it was and how frequently it was misdiagnosed - especially early on. So I didn't really get too stressed. I was referred to a specialist in Maternal Fetal Medicine at the University of Louisville for a higher level ultrasound and consultation.

During my first trip to Louisville the ultrasound tech and doctor were unable to find a separate amniotic sac for each baby. It was decided that I would make the 1.5 hour trip every two weeks from that point on (I was about 12 weeks pregnant at that time).

At every visit since then I have had an ultrasound. They have never been able to find a separation in the amniotic sac. While we continued to hope for misdiagnosis for several months, we are now certain that we have a very rare type of identical twins know as monoamniotic twins (or MoMo's).

Twin Surprise

We learned we were having twins on September 30th, 2008 when we were about 8 weeks pregnant. The doctor thought she had possibly seen twins a couple of days earlier, so we were eased into it a little bit, but it was still a shock. In fact, I still can't believe it!

I still have a waist here!

The lumps!

Do we look a little stunned?